Columns

Imagine being a little kid and your parent gives you a quarter for the machine at the store so you can get the shiny ball you’ve been eyeing since you arrived. You put in your money and turn the dial, waiting anxiously for that one ball. Then you open the…

When the youngest of my three sons was diagnosed with erythropoietic protoporphyria (EPP) in 2009, I was a hot mess. His gut-wrenching pain was unbearable for him, and it didn’t make sense that it stemmed from something as natural as sun exposure. I remember crumpling on the floor. I…

“In sickness and in health, until death do us part.” On April 27, 2019, my husband, Daniel, and I made the biggest commitment of our lives. Little did he know that less than two years later, sickness would overpower health. In July 2020, I started experiencing symptoms of acute…

The pain of an acute intermittent porphyria (AIP) attack is almost unbearable. It feels like someone is squeezing my right side with their fingernails, and it won’t stop. It has to stop. I almost can’t take it anymore. “Yes, I can!” I say to myself. I can get through…

As Thanksgiving approaches, I find myself reflecting on the concept of gratitude — not the surface-level kind we often recite out of habit, but the kind born out of adversity. Living with porphyria, or loving someone who does, can feel like navigating a storm. Yet it’s in the storm…

I recently had the honor of attending the National Organization for Rare Disorders (NORD) Breakthrough Summit in Washington, D.C., on behalf of the United Porphyrias Association (UPA). The annual Rare Diseases and Organ Products summit brings together advocates, patients, researchers, and healthcare professionals from the rare disease community to…

Katherine was in her room putting clothes away with her chocolate lab, Bentley, by her side. Before she realized what was happening, she dropped to the floor, scraping her back on the bed on the way down. Bentley quickly came to the rescue by getting onto her lap and licking…

As I shared in my previous column, my husband, Daniel, my mom, and I drove to Chicago last month for PorphyriaPalooza. The event, held Sept. 13-15, was designed to bring together members of the porphyria community. Fifteen hours after starting our journey, we made it…

When we came together for PorphyriaPalooza in Chicago, Sept. 13-15, we knew we were onto something special. More than 100 of us, spanning the ages of 7 to 70 and representing 26 states and three continents, gathered to celebrate our porphyria community. The event was organized by the…

Toothbrush, check. Clothes, check. My book, “I’m Not Always Me,” check. Purple hair, check. Finally, I was ready to go to Chicago for the PorphyriaPalooza! My husband, Daniel, and I had traveled to Michigan from our home in North Carolina in March 2019. Five years ago, Lake Michigan…